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    My SPMS

    Hi! Thanks for taking a moment to read my post. I have had MS for 18 years and SPMS for the last 5 years. I have not been on any DMT meds for four years due to the mysterious nature of SPMS. I have optic neuritis and am no longer able to drive. I also have neurogenic bladder, drop foot, muscle atrophy, weakness, ridiculous fatigue, RLS, Raynaud's, neuropathy, muscle spasms and a severe hangnail (just threw that in to lighten the mood of this list). I also have hope, a strong family and friend support system, a tricked out travel scooter, and all of you! Well that's my story and I'm sticking to it. I hope you have a great day!

    #2
    Originally posted by wheelzip View Post
    Hi! Thanks for taking a moment to read my post. I have had MS for 18 years and SPMS for the last 5 years. I have not been on any DMT meds for four years due to the mysterious nature of SPMS. I have optic neuritis and am no longer able to drive. I also have neurogenic bladder, drop foot, muscle atrophy, weakness, ridiculous fatigue, RLS, Raynaud's, neuropathy, muscle spasms and a severe hangnail (just threw that in to lighten the mood of this list). I also have hope, a strong family and friend support system, a tricked out travel scooter, and all of you! Well that's my story and I'm sticking to it. I hope you have a great day!
    Hi wheelzip

    Thanks for sharing your story. Sounds like you have a good attitude, all things considered.

    Glad to have you here at MSWorld.

    Hope to hear more from you.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      A good attitude is the best DMT. God bless you and good luck.

      Comment


        #4
        Originally posted by wheelzip View Post
        Hi! Thanks for taking a moment to read my post. I have had MS for 18 years and SPMS for the last 5 years. I have not been on any DMT meds for four years due to the mysterious nature of SPMS. I have optic neuritis and am no longer able to drive. I also have neurogenic bladder, drop foot, muscle atrophy, weakness, ridiculous fatigue, RLS, Raynaud's, neuropathy, muscle spasms and a severe hangnail (just threw that in to lighten the mood of this list). I also have hope, a strong family and friend support system, a tricked out travel scooter, and all of you! Well that's my story and I'm sticking to it. I hope you have a great day!
        Hi, Wheelzip! Glad to meet you, I'm a secondary progressive too. Good attitude? Yes, and it's difficult, but I want to keep going. Tell me more about your travel scooter...is it something that can ride on a bus with you? Kinda like a wheelchair? I'm thinking about this for the future, I'm still able to ambulate pretty well. A shopping cart borrowed from the market close to where I live is the best thing I've found so far. I still have the idea that I could ride a bicycle. May well be a lost dream, the bike would be best since the bus has a bike rack on the front, and since I drove in transit for ten years before I got diagnosed, I have a free pass. Where a wheelchair is concerned, I'm hesitant to go that direction, whether a free pass or not, it's an unfair use of a driver's time. I don't want to burden the system that way. Mind you I don't take a shopping cart on the bus...still looking around for something that will travel on the bus that takes the place of the shopping cart.

        Well this appears to have gotten a bit scrambled, so I will end here and look for yours and any other replies. Talk or type soon!

        Comment


          #5
          Welcome wheelzip. Glad to hear that you have both a great support system and tricked out scooter. Too bad we can't post a picture!
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Hello everyone who was kind enough to comment on my post! I don't know how to reply with quotes so I am just posting a reply...sorry. The scooter is called the Shoprider Echo 3 wheel mobility scooter.

            Comment


              #7
              scooters

              Originally posted by Dave Hall View Post
              Hi, Wheelzip! Glad to meet you, I'm a secondary progressive too. Good attitude? Yes, and it's difficult, but I want to keep going. Tell me more about your travel scooter...is it something that can ride on a bus with you? Kinda like a wheelchair? I'm thinking about this for the future, I'm still able to ambulate pretty well. A shopping cart borrowed from the market close to where I live is the best thing I've found so far. I still have the idea that I could ride a bicycle. May well be a lost dream, the bike would be best since the bus has a bike rack on the front, and since I drove in transit for ten years before I got diagnosed, I have a free pass. Where a wheelchair is concerned, I'm hesitant to go that direction, whether a free pass or not, it's an unfair use of a driver's time. I don't want to burden the system that way. Mind you I don't take a shopping cart on the bus...still looking around for something that will travel on the bus that takes the place of the shopping cart.

              Well this appears to have gotten a bit scrambled, so I will end here and look for yours and any other replies. Talk or type soon!
              Hi Dave, I actually have two scooters that I use. If you Google their names you can read all about them and I am happy to answer any questions that you might have. My smaller,lighter scooter is called the Shoprider Echo 3 wheeled mobility scooter. My big scooter is called the Golden Buzzaround XL 4 wheel scooter. I also have a folding walker that has 4 wheels and a small pouch under the flip up seat for a bit of storage. The walker is easily folded and is light. The scooters would be too large to load on a city bus. They are meant to either be ridden to your destination or transported by car for the most part. A walker could be carried up the steps of a city bus and folded and stored beside you in a seat. Here in my town there are buses specifically for persons with disabilities that have wheelchair lifts installed and drivers who are trained to assist the riders. I understand your feelings of burdening the system but disabled folks need to get around too and in my experience most people are very kind and willing to help. Again please feel free to ask me any questions that you may have! Always happy to help if I can.

              Comment


                #8
                Originally posted by wheelzip View Post
                Hi! Thanks for taking a moment to read my post. I have had MS for 18 years and SPMS for the last 5 years. I have not been on any DMT meds for four years due to the mysterious nature of SPMS. I have optic neuritis and am no longer able to drive. I also have neurogenic bladder, drop foot, muscle atrophy, weakness, ridiculous fatigue, RLS, Raynaud's, neuropathy, muscle spasms and a severe hangnail (just threw that in to lighten the mood of this list). I also have hope, a strong family and friend support system, a tricked out travel scooter, and all of you! Well that's my story and I'm sticking to it. I hope you have a great day!
                What an upbeat post! Although you begin by listing your symptoms and challenges, you end by emphasizing your blessings. I love it. Thanks for sharing.
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                .

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment


                  #9
                  Originally posted by wheelzip View Post
                  Hello everyone who was kind enough to comment on my post! I don't know how to reply with quotes so I am just posting a reply...sorry. The scooter is called the Shoprider Echo 3 wheel mobility scooter.
                  No need to reply with quotes; your thanks is enough.

                  But, if you wish to in the future, instead of scrolling down to the blue "Reply to Thread" near the bottom of the page, simply click on "Reply With Quote" at the bottom of someone's comment on your thread.
                  ~ Faith
                  MSWorld Volunteer -- Moderator since JUN2012
                  (now a Mimibug)

                  Symptoms began in JAN02
                  - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                  - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                  .

                  - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                  - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                  Comment


                    #10
                    Originally posted by wheelzip View Post
                    Hi Dave, I actually have two scooters that I use. If you Google their names you can read all about them and I am happy to answer any questions that you might have. My smaller,lighter scooter is called the Shoprider Echo 3 wheeled mobility scooter. My big scooter is called the Golden Buzzaround XL 4 wheel scooter. I also have a folding walker that has 4 wheels and a small pouch under the flip up seat for a bit of storage. The walker is easily folded and is light. The scooters would be too large to load on a city bus. They are meant to either be ridden to your destination or transported by car for the most part. A walker could be carried up the steps of a city bus and folded and stored beside you in a seat. Here in my town there are buses specifically for persons with disabilities that have wheelchair lifts installed and drivers who are trained to assist the riders. I understand your feelings of burdening the system but disabled folks need to get around too and in my experience most people are very kind and willing to help. Again please feel free to ask me any questions that you may have! Always happy to help if I can.

                    Hi Wheelzip! I haven't gotten around to looking up your scooters, but I need to. I appreciate your concerns about burdening transit. Unfortunately, we in this part of the world have a fair amount of abusers. When I was able to drive, I did my level best to accommodate everyone that rolled up to a bus stop in a scooter, or wheelchair. It did pay off...more than once I met a person that I had transported in my wheelie bus (wheelchair transport van) on another job. People that were so happy to see me roll up in that 40 foot long monster and know the person driving it!

                    And after the bus filled up completely, and could not hold another person, wheelchair or not, and find the goof that started spewing ADA regulation and "I'll call a lawyer" in alternating screeches, I just shook my head and gave him a card with the contact number and my bus number, and went on.

                    The office found it in their hearts to send a supervisor to get him a ride on a different bus and all was well.

                    Every day there is some good and bad, the trick is to make it good for as many people as possible.

                    Comment


                      #11
                      Been just about a year...

                      ...since I communicated here. In process of digging through the layers of paper that accumulate, I find some interesting stuff that didn't get read at a proper time; such as when seeing a doctor about eye problems. My vision being doubled is why I can't have a driver license, and I used to drive for a living. Not fun. This diplopia is what got me to an ophthalmologist in the first place, resulting in "finding" cataracts, and subsequent surgeries to repair these.

                      I dunno if this doctor can read, but I can and I should have told this doc to look at the chart from my initial diagnosis. I have what is called a skew deviation. Also known as strabismus. Never heard of this, and the causes include cerebellar and brain stem stroke. Which "can be" secondary to MS.

                      Things that make ya go: Hmmm...

                      Axe grinding mode kicked in at this point, and I wondered if I really had cataracts. The co - pays for doctor visits and surgeries almost wrecked me, as well as a family member who had a case of the goo over my disability pension being bigger than their military pension.

                      Then I started to wonder if there was anything to repair damage of this sort, and kinda guessed that there is not. As has been said before many times, brain does not grow back.

                      I'm only rooting through this mountain of paper because I have an appointment to see a new neurologist soon, and I don't have the images of my most recent MRI scan. I really found this interesting because I've not read any discussion of any sort of condition relating to this, here or anywhere else, at least that I can remember right at the moment.

                      I'm still here, hunting for anything I can find positive, even remotely. I have really lost faith in medicine where diseases of this sort are concerned, or maybe I'm just real tired at the moment. I will get to see this new doc somehow, hopefully with images of an MRI in hand, and see what I can find out. It is good that msworld is here, when I get worn out and start to ramble on at the keyboard like this!

                      Comment


                        #12
                        Originally posted by Dave Hall View Post
                        Been just about a year...since I communicated here.
                        Welcome back, Dave, after a hiatus. Yeah; I don't know if there is anything that can bring back what we have lost.

                        I'm seeing a functional medicine doctor who is filled with hope. I'm somewhat skeptical, but encouraged that, at least, I am not currently continuing to get worse. You can read about my journey here: https://www.msworld.org/forum/showth...ree-sugar-free

                        I hope your appointment with your new neurologist goes well. What prompted your switch?
                        ~ Faith
                        MSWorld Volunteer -- Moderator since JUN2012
                        (now a Mimibug)

                        Symptoms began in JAN02
                        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                        .

                        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                        Comment


                          #13
                          Hello Dave,
                          Welcome back to the MSWorld Message Board.

                          I am SPMS with optic neuritis also. I once got to consult a neuro-opthalmologist. It was one of the most informative doctor visits I have ever had. Try to find one for your eyes' sake and for a glimpse into the nervous system.

                          I have a VERY light walker that collapses side to side, with a mesh seat and a soft mesh basket. It can be rolled even in it's collapsed state, and it is easy to lift. It is called the Gemino.

                          Good luck with your appointment. I know it is frustrating to keep going for care and to feel that nothing changes.

                          Stay lifted,
                          Mermaid Susan
                          "Life is short, and we have but little time to gladden the hearts of those who travel with us; so let us be swift to love, and make haste to be kind."
-Henri Amiel

                          Comment


                            #14
                            Further updates to MRI

                            [QUOTE=Dave Hall;1518630]...since I communicated here. In process of digging through the layers of paper that accumulate, I find some interesting stuff that didn't get read at a proper time; such as when seeing a doctor about eye problems. My vision being doubled is why I can't have a driver license, and I used to drive for a living. Not fun. This diplopia is what got me to an ophthalmologist in the first place, resulting in "finding" cataracts, and subsequent surgeries to repair these.

                            I dunno if this doctor can read, but I can and I should have told this doc to look at the chart from my initial diagnosis. I have what is called a skew deviation. Also known as strabismus. Never heard of this, and the causes include cerebellar and brain stem stroke. Which "can be" secondary to MS.

                            Things that make ya go: Hmmm...

                            I've come back from the pile again. This has been a few years running, and as updates go, more news that's not fit to print. Somewhere in this long and rambling series of messages, I indicate a lack of faith in medicine. Boy, did that one ever get more evident. Most recent doctoring event was an annual site visit. First one that I can remember, but that's not important right now. The insurance company that has my medicare supplement sent a doctor. I found his info, and just about fell on the floor. Nice gentleman, might have an idea of medical stuff, physician search says "general surgeon". Okay, gonna amputate this MS thing, eh? He's 93 years of age, drove himself here, has an office (allegedly, I have no idea where this office might be.) In all honesty I had to be impressed that a doctor, who did his first residency at The University of Cincinnati Medical Center the year that I was born, is still able to practice, keep certified, etc. etc. etc.
                            Short story getting too long, all he needed to find is that I have blood pressure, and can somewhat move around. I pass!
                            On a brighter note I have discs with MRI images that I took dating back to 2011. The quest to find a neuro continues. Other news and changes may well show up in another post on another board here. For now, I have to view this as a positive, even though a doctor without a clue (MS who?) is sent to see me, and only fill in the blanks in a spreadsheet.
                            Not giving up, but I still need to find better ways of managing this stupid disease. I don't post too often here, but I use as many words as I can come up with when I do come in here.

                            Comment


                              #15
                              Originally posted by Dave Hall View Post
                              Not giving up, but I still need to find better ways of managing this stupid disease.
                              Yup; we're probably mostly all in that boat.

                              Thanks for the update!
                              ~ Faith
                              MSWorld Volunteer -- Moderator since JUN2012
                              (now a Mimibug)

                              Symptoms began in JAN02
                              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                              .

                              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                              Comment

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